In other news, Nathan has decided he wants to go back to school.
And I totally support his decision.
We've talked about it on and off over the past year and a half (let go of the missing hyphens, grammar nazis; you know who you are).
This summer, he spent quite a lot of time with two women I trust implicitly: Momma Christine and Momma Bonnie. And they told me that Nathan said that he's going to school in September. Furthermore, he even said which school he's going to, which is the same school he's attended in the past and where Isaac currently goes.
So, I'm cool with this. He'll be 10 on September 10th. And his seizures are under some pretty serious control. He's in a very different place than he was a year and a half ago (now I'm just omitting them to piss you grammar nazis off. Is it working?).
He started a new pharmaceutical medication in April, after I returned from my trip with Stacie to Tucson. And I give this pharmaceutical medication credit for decreasing the seizures so significantly that he was able to play soccer this past spring. (yes I culturally reference myself; it's my blog and I can do what I want.)
Yes, this is his SEVENTH motherfucking pharmaceutical that we've tried to control his seizures. It's what happens when you're diagnosed with Lennox-FUCKING-Gastaut Syndrome, or LGS. There's not really a FUCKING in the name. It's just how I say it. And this syndrome was discovered by two neurologists:
Lennox-Gastaut Syndrome was first defined by Dr. Henri Gastaut in France in 1966 as a very severe form of childhood epilepsy, with certain common features. Dr. William G. Lennox in Boston described features of the EEG in this condition.
So, you gotta say Gas-TOE for Gastaut, because he's a French dude. Ok? Lennox-Gas-TOE. Not Gas-taught. Gas-TOE. And, this is the incredibly rare form of epilepsy that my son has. Of course. Because we Andersons don't do shit half-assed. Oh no. Only FULL-ASSED from the Andersons. (hyphens for the grammar nazis! you're welcome!)
Annnnywaaaayyyy...last week I met with the principal, who is fully supportive of Nathan attending 3 days a week, in the mornings, until about noon-ish. My plan is to roll both boys in at the start of the morning, because it'll be easier on ME to get them both up and moving and out the door at the same time.
And he'll be on the big playground. Because he has friends that he's known his entire life that are on that playground and that are going to want to play with him and who are going to look out for him and who are going to help him.
And he'll be in the lunch room. And he'll have the same special ed teacher, but we don't know who his gen ed teacher will be, but that's ok. We'll figure it out. He will have input.
But this is really exciting for us as a family. Nathan's taking initiative in his own life, and for any kid, it's huge. But for a kid with special needs, it's even bigger.
Monday, August 29, 2016
Saturday, August 27, 2016
Cry For You
I recently had the opportunity to practice yoga in the barn at a local lavender farm in Sequim.
But this isn't just any lavender farm. It's B&B Lavender Farm, and is owned by some very dear friends of ours, Zion and Kristy Hilliker (and her parents, Bruce and Bonnie--it's a family effort!).
But this isn't just any lavender farm. It's B&B Lavender Farm, and is owned by some very dear friends of ours, Zion and Kristy Hilliker (and her parents, Bruce and Bonnie--it's a family effort!).
And the yoga studio I recently started practicing at, Poser Yoga, does these pop up yoga classes every so often in different locations in the community. And while I'm currently unable to get to classes on a regular basis, and I've got a pretty strong yoga practice at home, I couldn't pass up the opportunity to practice with my friend Kristy in her barn. RIGHT? And, even though they have about 20 bazillion bunches of lavender hanging in the barn, the scent of lavender wasn't nearly as strong as I anticipated it would be. It was really hardly noticeable. Seriously. I'm not a huge fan of lavender, but I am a huge fan of supporting my friends and doing yoga with them.
The class was fantastic; there were about 10 people who attended, and no, I didn't know anyone except for Kristy and the teacher, Jenny (who is the owner of Poser Yoga). And it helped bring awareness to what I can add to my own practice to strengthen it; basic poses that have fallen off my radar, like Warrior II and Triangle. Who forgets the Warrior and Triangle series? This girl. Because CANCER makes you forget basic things, including your own name. Anyway, it was a pleasure to practice with a supportive group of strangers. It was humbling and beautiful; challenging and stress relieving.
After the class was over, Zion, who is Master Gardner (basically, this means the dude is a badass and knows more about lavender than I ever thought possible [and I mean that as a compliment]) gave me a tour of the barn where he uses lavender to create everything from lip balm to essential oil to soap to all purpose cleaner to sell in the gift shop. I also got to visit with Kristy, and inevitably we talked about my family's situation (not bad, it's just that it's gonna come up, right? It'd be like if you had a chance to talk to Paul McCartney, you'd talk to him about the Beatles, right? You wouldn't just be like "Yeah, your work with Wings was cool" and you certainly wouldn't say something like "I really liked it when you did 'Say, Say, Say' with Michael Jackson," and leave it at that. Right?! You're gonna ask him about Revolver or Sgt. Peppers. Seriously.)
Annnnnnyway....
Like many people have said to me, Kristy said something like "I don't know what to say. I'm sorry I can't find the right words. I read your blog, and Randy's blog...and I wish I knew what to say that would be helpful."
And, as usual, I said something like, "I don't expect you to know what to say. I am in an incredibly difficult and scary position.... Nobody knows what to say. And nobody wants to be in my position."
But then she said something nobody has ever said to me before, and it impacted me on a very deep level. She said: "when I read your blog, I cry for you. I just cry because I can feel what you're feeling when I read what you write."
And I'm thankful she cries for me. Because I also discovered that day that I don't cry for myself. Or for my situation, or my husband, or my special needs son, or my neurotypical son, and what he deals with in dealing with his family's ailments.
So I've started crying.
A lot.
Because why?
Why me?
Why my family?
Why my husband?
Why my children?
Why?
It's not because "god" pointed a finger and said, "Let's give her breast cancer and him tonsil cancer and him a constellation of brain disorders."
It's not because I curse a lot. Or not enough, in some instances.
It's not because I'm being challenged by "god" to be stronger, or more diligent, or more or less of WHATEVER.
It's not to make me stronger.
It's not because I pissed someone off in a previous life. Or because I was "a difficult child."
It just is.
But, GODDAMNIT I am sick and tired of dealing with these major health crises in my family.
I'm not a crier. My therapist, Jan, who just retired after me seeing her pretty much weekly for 3-1/2 years, can attest that I'm not a crier. I cried on her less than a dozen times. I started seeing her just after Nathan was diagnosed with autism, when he was 6; he'll be 10 on September 10th. And she's been with me through autism, my breast cancer, the death of my father-in-law while I was going through cancer treatment, my husband's cancer, my mother's undiagnosed dementia, and the incredibly rare skin disorder my mother-in-law has. Normally, a therapist will have a person come to them for support with ONE of these issues; but, unlucky me, I get them all at the same time. The experience, insight and support Jan provided me throughout these health issues was a tremendous help.
At one point, she said, "maybe you're like Nelson Mandela, who was forced to embrace his situation and his life's work became that of a great leader and a great man. Maybe you're life's work is to embrace this shitty situation that you're in and you're becoming a great leader, especially in the field of Health. I mean, look at what you went to school to do. Look at what you chose to major in. Look at how you're educating people. Look at the fact that you're a college professor, teaching about Health issues. This is your life's work, Rachel."
And so I find myself working to embrace my situation. To accept it. And with that, it's ok to cry for myself. It's ok to feel sorry for myself, for my family, and to wallow in it for a little bit. To feel weak, as alien as that feeling is for me.
But, it's also important to get up and do Warrior and Triangle. To build strength. To feel strong.
And, it's ok to cry while I'm doing Warrior II. Because sometimes in life, we find ourselves in a dichotomous situation, and it's important to find a balance.
So, thank you Kristy, for being honest and telling me that you cry for me, because I am learning to cry for myself.
It's not because I curse a lot. Or not enough, in some instances.
It's not because I'm being challenged by "god" to be stronger, or more diligent, or more or less of WHATEVER.
It's not to make me stronger.
It's not because I pissed someone off in a previous life. Or because I was "a difficult child."
It just is.
But, GODDAMNIT I am sick and tired of dealing with these major health crises in my family.
I'm not a crier. My therapist, Jan, who just retired after me seeing her pretty much weekly for 3-1/2 years, can attest that I'm not a crier. I cried on her less than a dozen times. I started seeing her just after Nathan was diagnosed with autism, when he was 6; he'll be 10 on September 10th. And she's been with me through autism, my breast cancer, the death of my father-in-law while I was going through cancer treatment, my husband's cancer, my mother's undiagnosed dementia, and the incredibly rare skin disorder my mother-in-law has. Normally, a therapist will have a person come to them for support with ONE of these issues; but, unlucky me, I get them all at the same time. The experience, insight and support Jan provided me throughout these health issues was a tremendous help.
At one point, she said, "maybe you're like Nelson Mandela, who was forced to embrace his situation and his life's work became that of a great leader and a great man. Maybe you're life's work is to embrace this shitty situation that you're in and you're becoming a great leader, especially in the field of Health. I mean, look at what you went to school to do. Look at what you chose to major in. Look at how you're educating people. Look at the fact that you're a college professor, teaching about Health issues. This is your life's work, Rachel."
And so I find myself working to embrace my situation. To accept it. And with that, it's ok to cry for myself. It's ok to feel sorry for myself, for my family, and to wallow in it for a little bit. To feel weak, as alien as that feeling is for me.
But, it's also important to get up and do Warrior and Triangle. To build strength. To feel strong.
And, it's ok to cry while I'm doing Warrior II. Because sometimes in life, we find ourselves in a dichotomous situation, and it's important to find a balance.
So, thank you Kristy, for being honest and telling me that you cry for me, because I am learning to cry for myself.
Wednesday, August 10, 2016
Seven Hours
Today, while Randy Anderson and I were at the cancer center for seven, yes I said SEVEN, hours...
And who gets cancer treatment for seven motherfuckin hours? Jesus it's been a long motherfuckin day!
I don't know how some dear friends of mine, who are also on a cancer adventure drive to Seattle, which is like 2-1/2 hours plus a ferry ride...I mean they go over the night before, but still. Because his treatment was like NINE motherfuckin hours!!! And then those crazy sonsabitches drive HOME after that! That, THAT, is some super motherfuckin powers right there! (Don't correct my grammar, bitches!)
Anywho...
So today, the pharmacist who's mixin up the chemo is a former student of Randy's. Thank you, Jake, for paying close attention in math. Seriously. You're saving lives.
Oh and thanks Randy Anderson for being a kick ass math teacher. That's paying it forward, yo.
So while we were at the cancer center for seven motherfuckin hours, the boys were with their first ever kid sitter, Trey, who is now 20 and home on summer break from college. And Trey took the boys to Salt Creek, which, everybody knows is THE place into be when you're a kid because there are tide pools, and old WWII bunkers, and a park and its beautiful!!! Even on a grey day, like it was today.
And I did not worry about them.
So thanks, Trey, for showing my kids the best day ever. I'm so thankful for you.
And thanks Jackie, you're an awesome mom. I love you.
Monday, August 8, 2016
Excruciating
Being here is excruciating.
We're at the Sequim Cancer Center.
Again.
Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.
The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?
Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.
The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!
So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.
His schedule looks a little like this:
Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.
Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.
Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.
Thursday 7:30 am radiation, and that's it! Out by 8:00 am!
Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.
The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is.
Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?
The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.
And I get it. Because it's not like I haven't been there.
But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...
So.......
You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.
I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!
The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!
Bitches!
Get to it!
All my love always,
Rachel
You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette
Lennon/McCartney
We're at the Sequim Cancer Center.
Again.
Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.
The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?
Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.
The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!
So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.
His schedule looks a little like this:
Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.
Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.
Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.
Thursday 7:30 am radiation, and that's it! Out by 8:00 am!
Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.
The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is.
Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?
The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.
And I get it. Because it's not like I haven't been there.
But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...
So.......
You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.
I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!
The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!
Bitches!
Get to it!
All my love always,
Rachel
You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette
Lennon/McCartney
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